Tuesday, September 1, 2009

More bad news

Iggy and I spent pretty much the whole day, from 11 a.m. until 7 p.m. at the hospital. As is usually the case, this was not a good thing. To summarize, here is the update e-mail I just sent out to a few people:

Hi everyone-

Iggy and I spent all day at the hospital today and unfortunately received further bad news. The doctors discovered that my cervix is effaced to 1 cm, which is usually indicative of imminent labor. Although I am not having any contractions or anything, basically, this means that I could go into labor at any time between right now and December, although the doctors say that it is "very unlikely" that this baby will make it to full term.

Since I am just shy of 26 weeks gestation, this would be very bad news under any circumstances, but since our baby will require major surgery in his first days of life, things look very dire. We met with a neonatologist who told us that the chances of survival for this baby are essentially nil prior to 34 weeks. The baby would not be large enough to survive the first surgery and would not survive to grow big enough to have it. Even at 34 weeks, his chances of surviving the first surgery would be low, approximately 20%. At 37 weeks, he would be considered "full-term," but again, doctors tell us that the chances of this happening are "low." Unfortunately, nobody can tell us exactly what "low" means in terms of numbers.

The doctors gave us a few options as to how to proceed from here. One option was bedrest, either as an inpatient in the hospital or at home, however, they told us that there is no evidence that bedrest actually does anything to prevent labor. Another option they gave us was to effectively terminate the pregnancy by inducing labor now and then providing only comfort care to the baby for the short duration of his life. We have chosen to follow the third option which is to try to take it easy, but basically continue with normal activities, and to continue to monitor the situation and hope for the best, although it does not
look good at this point. We will schedule a follow-up ultrasound in the morning, hopefully for Friday.

Obviously, this is a huge blow to Iggy and myself, just when we felt that we were starting to deal with the previous round of bad news. The funny thing is that we had an ultrasound and a fetal echocardiogram today, and other than this, got pretty good news. The baby is actually large for his gestational age (2 lbs., 6 oz. or 70th percentile), with no current evidence of the mysterious "bowel spots" seen on the last ultrasound, and his head growth is proceeding normally (children with HLHS often have restricted blood flow to the brain, which causes impaired head growth and neurological abnormalities). The small ascending aorta the surgeon had expressed concern about is now apparently growing normally, but of course, his underlying HLHS is still there. So that's the "other than that, Mrs. Lincoln, how did you like the play?" part of the story.

So, while a good outcome from all this is still not impossible, it is looking significantly less likely. Thankfully, Iggy and I are in agreement that while we want to do everything reasonably possible to give this baby a chance to survive, we realize that even under the best of circumstances, our son will face immense challenges, so if this doesn't work out in our favor, it may be for the best, although it certainly doesn't feel that way right now.

Anyway, I will continue to keep you posted, but wanted to get the news out about this tonight.




  1. Jen,
    I think it's great that you have remained positive. We are certainly thinking of you & pray that your little one will decide to stay put for as long as possible!

  2. Wow, that is always hard to get news like that. I know risks exist when babies arrive early, they also told us that Lucas needed to make it as far as possible, which was scary. We ended up having an unexpected emergency c-secion to to unrelated issues. He was bigger than anybody thought (he was only in the 10th percentile at 28 weeks, so it is amazing that your litle guy is already in the 70th). Lucas was 6lb 2 oz at 35 weeks. He ended up doing pretty well with it. I was very scared because of all that we had heard about him needing to make it so far, it is frightening. We pray for you guys during this very difficult time. If you would like to email me, my address is marathongurl262@yahoo.com

    Take care,

  3. Oh Jen, I am so sorry. What a rollercoaster. I hope that whatever the best outcome is, occurs.

  4. Seconding tracing -- I am so sorry to hear about this new setback, and I am wishing the best for all three of you.

  5. thinking of you and sending out positive vibes and all that hippie crap that sometimes you just need especially to the little one.