Latest Update

Hey Everyone,

I want to start by first thanking everyone for being so supportive in the past month. Joby and I couldn’t have made it through the last few weeks without you. I appreciate every phone call, email, card, flowers and everything. We’ve learned a lot about ourselves, our relationship and the kinds of people we have in our life and we are very grateful to know you all. Thank you.

So…

We’ve had two doctors appointments since they day we learned one of our twins died. Last week I saw my regular doctor and he gave us a good report on the status of our baby boy. We were able to go in on Labor Day and spend a lot of time looking at him on the ultrasound when no other patients were there and he was moving around a lot. (More on this subject – Our little boy is a huge Gator football fan… Some people might tell me that the noise from the game is what makes him kick so much… but I’m going to believe he’s a Gator in the making. :-) He definitely kicks a lot when we’re at the games. It’s really fun.) Anyway – the doctor thinks he looks good and as of Labor Day his weight was approximately 1 pound 1 ounce. So that’s normal too. We left the appointment feeling hopeful but didn’t want to send out any updates or anything until we went to see the specialist this week.

So Tuesday Joby and I went to Shands to see the specialist doctor. (Our appointment was for 10:30am… and we didn’t see the doctor until 12:20pm. Yeah, it was frustrating.) This doctor told us that the brain, heart, blood flow, and everything looked good. He still can not detect any kind of brain damage. It appears that the slightly prominent bladder, slightly thicker heart wall and increased amniotic fluid that he saw at the last appointment have all corrected themselves and our baby’s size, etc is all normal. He weighed approximately 1 pound 3 ounces too so he’s growing. We started to breathe a sigh of relief until he brought up his only concern. The doctor was able to see our baby’s bowel on the sonogram (something called Echogenic bowel). Basically part of the bowel appears moderately whitish but not quite solid, bright white like bone structure. The doctor said that the color was not quite bright enough that he would normally mention it to the patient. But given our hist ory with this pregnancy he wanted to let us know what the possibilities are.

The scary things:

The visible bowel could be an indicator of a chromosomal disorder such as Downs Syndrome and Cystic Fibrosis. Luckily the likelihood of this is low because all of my blood work screens came back negative for Downs, and I am not a CF carrier so that is not really even a possibility (ultra rare test errors aside). Plus, the doctor can not see any other indicators on the ultrasound that it could be Downs, like no water on the brain, no excess fluid build up at the base of the neck, etc. Everything else looks perfectly normal. We could have an amnio done but the risks for that are higher than the chance of my blood work tests showing a false-negative result. Given everything else that has happened it’s not a chance we’re willing to take right now. The echogenic bowel could also mean a type of viral infection. Something that could be very bad but nothing we can do anything about.

The more probable things:

Echogenic bowel is also associated with two other possibilities… two that more likely fit the big picture of what happened when one of our boys died. The least risky possibility is that there is a small amount of pigmentation in the amniotic fluid that has leeched from the other baby’s sac (albeit sterile and no risk to our surviving twin). If it is a pigmentation problem then it just means our boy is swallowing his amniotic fluid (per normal) and it’s staining his bowel system.

The other possibility is that at the time of death for the one baby there was a loss of blood pressure in the surviving twin causing part of his bowel to physically die. This would mean that when he is born he would have to have an operation right away to remove the dead bowel section and repair the problem. Luckily babies don’t need their bowels until after birth anyways because they get their nutrients, etc through the umbilical cord. It’s a fairly common surgery and although still scary, definitely manageable. The good news is that in our specialist’s personal experience (over 18 years of high risk pregnancy work) when he’s seen echogenic bowel as a result of loss of blood pressure from the death of one twin, he has also seen brain damage (since the brain is more sensitive than the bowel for loss of blood pressure)… and our doctor doesn’t see any brain damage on his level 2 ultrasound. That doesn’t mean it’s not there, but it’s far less likely.

So like the doctor said, he was hesitant to even bring the echogenic bowel up because it’s not visible at a level that he would normally bring it up to other patients. Often (~50%) they’ll see this on one ultrasound and it will be gone by the next. So we are cautiously optimistic that nothing serious is wrong with our baby. It feels like we’re on a HUGE rollercoaster but given all the information about all the possibilities, we’re keeping perspective as best as possible.

Overall we have been doing a lot better than we were when we last wrote you. We’re working on names for our boys still and have looked at nursery themes (and I think we may have decided on a theme)… more on that later… We won’t order furniture or start that process though for a little longer. I want to clear a few more weeks without problems. Yesterday I went in for my very first massage… it was awesome. Yes, I went to a massage therapist that specializes in pregnancy massages so no worries on injury to the baby. :-) As it turns out my insurance covers all but $15 of my massages and I can get one every week for the rest of my pregnancy plus every week for up to three months after my pregnancy. Yeah, a one hour full body massage every week for $15. I can totally be ok with that. I also get a lavender scented paraffin hand treatment each week too. All included. :-)

So I hope this fills you in a little bit on what is going on with us. I can’t reiterate enough how much your support has meant to us. Thank you again.

I hope you all are doing well and I also hope to bring you all good updates from here on out! More soon…

:-)

Colleen & Joby