5/9/2012

Thank you all for your continued love, prayers and support! Here is our most recent update:

Our appointment went well on Wednesday. During the ultrasound both girls looked like they were doing well. They both appear to be growing on track and there was no indication of Twin-to-Twin transfusion, which they are always checking for in pregnancies where twins are sharing one placenta. We also received our final test results back from our amniocentesis and they looked pretty much the same as the preliminary results: Baby A (Isla) was confirmed to have Trisomy 13 and in Baby B (Ava), they didn't find any cells with Trisomy 13 or any other chromosomal abnormalities that are screened for. So this is the best news that we could ask for, YEA! The doctors still want us to be cautious with our expectations as they cannot guarantee that all of the cells in Ava are free of Trisomy 13. They are bothered most by the fact that Ava also has a cleft lip and that the findings are completely unexpected from a medical standpoint, since Ava and Isla appear in all ways to be identical twins. They are waiting for test results (in the next week or so) that can determine whether or not the girls are identical twins or fraternal. They said that they would be very surprised if it came back that they are not indeed identical, but that they have been surprised by so many things so far, that they wouldn't count out the possibility. The findings wouldn't change the way that they are managing my care (because of the shared placenta ect.), but if it turned out that they are not identical, they would expect that Ava's cleft lip was due to environmental factors and not chromosomal. If indeed they are identical twins and Ava doesn't have Trisomy 13, it really is amazing. When you look at the genetic side they only way this could happen is through something called a Triosomy Rescue which is practically unheard of (<1% chance, though it is hard to say because they just haven't seen it occur many times). In essence I look at it as Baby A, giving Baby B a chance at life! It all makes much more sense in illustrations, just know it is amazing. When we had asked Cam what we should name his sister if we had a baby girl, he said Ava and Jeff and I really liked it. When I looked up the meaning and it was "life," it somehow seemed even more beautiful and full of hope. There is still a long journey ahead, thank you all so much for your continued prayers and support. We can't thank you enough.

22 weeks

4/27/2012

We just got some preliminary good news today regarding our amniocentesis results, that our twin baby girl "B" may not have Trisomy 13 like baby "A". The lab and doctors were very surprised by the preliminary findings and and have more information to analyze before they are comfortable to giving us the new that we are hoping and praying for. We should get the final results in 7-9 days, but Jeff and I are at this point moving forward with the hope that one of our girls will be unaffected by Trisomy 13. We feel hope and even doctors are searching for how/if this could be. Maybe we will get to be part of a miracle. I don't want to get ahead of myself though, there is still so much unknown.  And in all twin pregnancies even if Trisomy 13 is ruled out we know there is a long road ahead. 

Again that you for all for your continued prayers and support, I am overwhelmed by the magnitude of people who are praying for us and our girls. Thank you!

21 weeks w/twins

4/24/2012

It's been an emotionally exhausting past few days. At Mondays ultrasounds we saw even more issues affecting baby "A" which lead the doctors to strongly believe she has a chromosomal abnormality calledTrisomy 13. Because they are identical twins we learned that means our other girl could be affected too, just presenting differently. On Wednesday we thought we had already had the worst news. Then we learned that if baby "A" does have Trisomy 13 there is a less than 1% chance our other daughter doesn't, especially since she is also presenting a cleft lip (a soft indicator for T13). There is so much complexity that comes in to play with gentics, but seeing illustrations ect., it was painfully easy to understand the odds not being in our favor. We will know more in the next few days/weeks. Working on regaining/holding on to a sense of peace. Thank you so much for your continued prayers. All of the love and support is encouraging. I know that there is a reason for all of this even if we don't understand. I keep praying for peace and trust even when things don't go the way that I planned. I have already seen God working in so many ways through this experience and have no doubt he is bringing people and relationships into my life in ways they would never have been before.

4/19/2012

19 Weeks

We went in for a routine 2nd trimester ultrasound, wanting to see 10 fingers and toes and hoping to find out if we were having a boy or girl. Right away we got the feeling that something was wrong. The technician asked questions like, " Was your first pregnancy considered high risk?" (No, everything went great). "So how have you been feeling?" (I've had really bad all day morning sickness, but it's starting to get better). "When do you see your doctor next?" ( I just saw them this morning, but I can see them as soon as I need to). When we saw him write baby "A" on the screen my husband and I both knew it must be twins. Wow, talk about overwhelming and unexpected. Unfortunately we could quickly tell that was not the news or his reason for concern. He was easily able to tell us that baby "B" was a girl, when we asked about baby "A" he muttered that he thought a girl too. Then he told us that everything did not look right and that he was seeing some things that really concerned him. 

When he left the room to consult with the doctor I couldn't stop thinking about all of the terrible things that he could be about to tell us, hoping maybe it wouldn't be as bad as anything I imagined. Instead he came back and shared that baby "A" had numerous abnormalities, her brain hadn't developed past the brain stem, a cleft lip and facial abnormalities, that she had a heart abnormality and that she was "incompatible with life." The only abnormality that he could see in baby "B" was a cleft lip. After a consultation with the reviewing doctor we were referred to the Maternal Infant Care Clinic in Seattle for an appointment with a specialist the next week. Walking out of that appointment was nothing like we imagined. There wasn't the excitement to call everyone we knew with the great news, because it wasn't, what do you even say? It just all felt overwhelmingly sad. We wished we could meet with a specialist right away, and have all our answerd, but we knew we would just struggle with questions over the weekend.