Sunday, June 19, 2011

Decisions, Decisions

29 weeks + 1 day, 12 weeks + 3 days post rupture, day 40 at my parent's place.

As a mentioned in my Thursday post we are starting to get to a 'decision making' point in this pregnancy. Dr. Eeyore (who I will now start referring to again as Dr. S. as he is no longer such a downer) actually left the room at one point on Thursday to discuss my case with other OBs in his practice. His question for them was "when should I deliver this patient?"

Their answers were the standard "let her go to 34 or 36 weeks if she's stable...and by the way why if she's a pPROM isn't she in hospital?"

The answers these other OBs gave made me kind of nervous. They were using the textbook 'standard of care' model to answer his questions, but as we know, I'm not the standard.

At all. Ever.

And it wouldn't matter so much what those other OBs think as long as Dr. Eeyore (whoops, Dr. S.) and Brian and I are all on the same page. If he thinks it's best to deliver at 32 weeks and the NICU team agrees, I'm all for it. I recognize that every day I stay pregnant I'm helping Acorn to avoid 'preemie' problems, but I also recognize that each day is another day I could get infected which would drop Acorn's chances of survival significantly. So maybe it would be better if I hit 32 weeks and baby still looks good, we call it a day and say "ok, Acorn you're coming out!" I especially liked that Dr. S. is leaning towards 32 weeks because he doesn't want to push our luck. He's conscious of our prior loss and this past Thursday was the first time he ever referred to 'what we've been through'. He wants us to have the best shot possible at a healthy baby, and that means the world to us.

So Brian and I figured we take it a week at a time. Each time we see Dr. S. we'll make a decision regarding Acorn: take him this week or leave him?

Then we found out Dr. S. GOES ON VACATION FOR FIRST THREE WEEKS OF JULY!!!! (Weeks 31 through 34 of my pregnancy, assuming I get that far).


Now I know, everyone deserves a vacation, and July and August are big vacation times here in Canada so I shouldn't really be surprised. Plus, we still have two more appointments with Dr. S. (June 23 and 30th) where I hope we can devise a plan...but after that, some other OB will be 'managing' my case. Now it won't be so bad if it's say, Dr. K. I trust him and he knows about our 'case', but it could be some doctor we've never met before! This doctor might not be as willing to do a C-section on a woman whose 'doing well' at 32 weeks and might want to 'push it'. That might be a good call, or it might not be. But I would hate to leave that decision with a doctor who we might have just met.

I feel like if Dr. S. goes away and I'm still pregnant, Brian and I might have to be more forceful in terms of advocating for ourselves with a new doctor on board, and might be more responsible for decision making. Taking Acorn out at 32 weeks (or 30, or 31?) might be a good call. But what if Acorn suffers from more preemie problems due to us 'rushing' in, like NEC or IVHs or a PDA or even less serious ones like GERD. And what if his or her lungs are 'worse off' then they would have been at 34 weeks? But what if we delay hoping for a bigger, stronger, more mature preemie, but then infection sets in. An infected baby at any age is bad news.

And don't get me started on the lungs...the state of Acorn's lungs keeps me awake at night.

Who knew this 'parenting' thing would be so HARD? Of course, the up side of having to make the decision of when to 'start' our premature baby's life, is that it will hopefully make any other normal parenting decision we have to make seem easy by comparison. When should we start solids? Who should babysit our child? What school should Acorn attend? Can Acorn walk to school alone at age 12? Should we allow Acorn to go on an overnight camping trip with friends at 15? Should we be upset if Acorn gets a tattoo at 17?

Those will be cake by comparison. Now if we could only be assured we'd get there.

Have you ever had to make any life or death decisions for your child, either the living or the dead? Did you feel afterwards that you made the right call? Why or why not?


  1. I have, and quite honestly looking back I found Dr K to be a bit too optimistic of our chances. That said, I would trust him to make the call again. He is one of the most incredibly caring and SMART individuals I have ever met. I hope he is covering when Dr Eeyore is away.

    As an NICU nurse you must have seen so many difficult decisions made. You've laid out the facts here but you must also know there is a certain 'gut' feeling that has to sway the decision. Week to week seems the best way to go. When it is time you will know. The key is to make Dr S leave you in the care of someone who will deliver acorn when you feel the time is right.

  2. Week to week seems like a good way to go. I hate that Dr. S will be away for 3 weeks, but doesn't that just figure. I hope Dr. K will be covering for him. I know you already have so much to worry about...this doesn't help.

    I've never been in your position and never had to make that decision. I don't even know what to say about it. You are stuck between a rock and a hard place and it sucks. But I'm glad you've gotten this far and have this decision to make, no matter how much it sucks.

    I agree with moplans that you have to go with your gut. Maybe it is harder to do that since you are a nurse and have seen so much. And if you are like me, I would worry myself sick that myself sick that my gut instinct is wrong.

    Thinking of you, as always.

  3. I'm going to switch gears here a little...overnight camping at 15?? Hell no!

    Just my two cents today.

    Thinking of you too. You will know what to do when the time comes. You are an intelligent woman and will do the right thing.

  4. I have been reading your blog for quite some time, and I have tried several times to leave comments but for some reason that will never "take." So hopefully this one does...
    First I must say that even though Acorn isn't here, you are an amazing mom. You have already been through so much just to give your Acorn a chance. That's incredible. I can't imagine the stress you are experiencing on a day to day basis, just worrying about yours and your baby's well-being, on top of grieving for Aidan. It's more than one person should have to ever deal with. I think about you all the time and each time I see a blog post from you, I hold my breath and hope it's not bad news.
    Our nine month old daughter, Ellie, died in October of a sudden bacterial bloodstream infection. She died within 25 hours of showing signs of illness. We were forced to make many life altering decisions for her that day. I think about the decisions we had to make that day, I don't know if we made the right ones. I feel like we made the decisions we had too. We gave her the best shot we could. In the end, nothing could save her. And I still feel a lot of guilt about certain things. I constantly question whether I made the right decisions. As a nurse, I feel like I should have prevented it. I'm telling you this because I want to tell you what a doctor told me in the weeks after her death...
    The doctor that did her death and ECMO review, called with autopsy results. We found out she had a problem with her spleen and if we had known of this problem, we could have prevented her illness. This is something I will carry with me forever. But the doctor told me, that "if your child had been in the backyard on a perfectly sunny day and got struck by lightning, you would be responsible. You would feel guilt. Because you are a mother." As mother's we are programmed to protect and if something goes wrong, we automatically take it to heart and feel like it's our fault.
    I just wanted to share this with you because I feel like when we are making such monumental decisions for our babies, the only thing we can do is take the advice of the experts and listen to our hearts. As long as we do whatever we decide with love and faith, then the rest is out of our hands. Sorry this got a little long... I will continue think of you and Acorn and I hope to see a post with pictures of a beautiful healthy baby in the near future!

  5. I hate that your dr is going on vacation when you need him most... Annoying.

    Are you still getting the steroid shots for lung development? I'm assuming yes. Is there any way (and even a point)? in doing an amnio before Dr. S leaves so you can see if Acorn's developed enough for delivery, should you need to do that before Dr. S is back?

    As far as making decisions in matters of life and death... Well, we didn't have a whole lot of choices to make. I can say, if I were in your shoes, I would do the week-by-week thing too. At each appointment, agree with the Dr. as to how Acorn is progressing, and when Acorn is "good enough", take him out. I wouldn't chance it past good enough... Are there more tests they can administer to check how his development is coming along?

    Feel free to ignore all of the above. I really don't know what to say, but felt I should say something. ;)

  6. I too say go with your gut, but I know that's not the easy answer either. There are no easy answers here and I really haven't had to face what you have. Hope was dead before I got a chance to make any decisions for and with Angus, it was a case of wait til 40 weeks or take him out at 38 - just doesn't compare to your problems, not by a long shot.
    So, I just want to send love and support.

  7. I would hate to be in your shores. :-( Deciding is *so* hard. I really don't want to talk about what it was (I'm in the office and would cry), but I really worry a decision I made meant my dear Blobby wasn't helped early enough to save him. The hardest thing is that if something goes wrong after your decision, you can't blame yourself. You make the decision and hope for the best. If the best doesn't happen, you can't blame yourself because the result could have been the same with the other decision - you can never know.

    No help, just ((HUGS)).

  8. The doctor's goal was to get Baby B to 32 weeks. They would have been thrilled with 28, but she was only 1 pound then, so the extra four weeks allowed her to gain 11 ounces. We watched every week for diastolic flow, and kept her in when it was absent. I wanted to get her out because I was so afraid that she would die from the absent flow. My peri was a genius though, and I decided to trust her. She said that when the flow reversed, we would "declare victory" and take her out. I think that our OB wanted to do it sooner, but he was not nearly as knowledgable as her. So I left it up to the doctor, because she helped me to put my faith in her. As it turns out, at exactly 32 weeks is when the flow reversed, and she came out the next day. She did well in the NICU for 7 weeks. Now we have a lot of problems. But, she was taken out at the perfect time and I will be eternally grateful that we didn't wait longer. We could have, as our peri said that it takes an average of 13 days for a baby to die from reversed diastolic flow, but l let her know that i was in no way comfortable with that. Besides, she had quit growing completely.

    When they got her out the placenta was full of clots, dying, muffin shaped, tiny, had a single umbilical artery, and the placental report basically said that it was shocking to see that it sustained life.

    So, I tended to err on the side of caution and my desire was to get her out sooner rather than later.

    You go with your gut.

  9. My little guy was born with an infection, and premature lungs. He responded well to the anti-biotics, but not to the breathing.

    Whatever you decide, Acorn has the benefit of wonderful parents who are working really hard to be great parents. Trust yourselves.


  10. I'm so sorry to hear that Dr S will be on holiday during those crucial weeks, particularly as Dr Eeyore had finally left the building.
    The main decision about my very premature girls, whether to attempt resuscitation or not, was not mine. If it had been, I don't know what I would have decided. No matter which call I made, I would have messed up horrifically because (with the benefit of hindsight) I should have asked for one twin to be left to die and the other to be resuscitated. I would never had been able to see that at the time. It would have been enough to ask me to make one decision, let alone two different ones.
    You just can never predict what will happen. The only thing you can trust is that you made the very best decision you could with the information that you had and you made it with love for your child.
    It is an impossible situation, particularly for somebody who is as well informed as you are. It is one thing to have someone explain to you about NEC, PDA & IVHs on the one hand, risks of infection on the other, but another to have seen these, what to the majority of patients would be 'hypotheticals', in action.
    And, yes, other parenting decisions WILL seem like a walk in the park after this one, I promise you.
    Thinking of you and Acorn xo

  11. I am so glad for your update...

    Is there a way that the doctor can do some sort of test to evaluate lung function prior to his leaving? At least then you can make decisions with him involved, prior to your case going to another doctor.

    After what you have been through, most other decisions will be a relative walk in the park.

    Thinking of you...

  12. I just wanted you to know that I'm still reading and still hoping! Huge huge hugs to you guys and here's hoping it's Dr. K!!

  13. Well I didn't have to make a life or death situation for my son Liam but I chose willingly to have fetal surgery on my son's spina bifida knowing there were risks but also that all of the babies who have had it have had remarkable outcomes. I could have just had the surgery after he was born like most babies have but I did this because I wanted him to have a chance at a better life and he died. The worst part is he was the only baby the hospital had ever lost in fetal surgery. So it was not a life or death situation going into it but he died because of the surgery so I often feel horrible since I made the decision to do it and it killed him. I hope I never have to make a decision like that again.

    I know our situations are different but I really feel for you and your husband on having to make such a difficult decision on when to have him delivered. Also the fear of having to work with a doctor you've never met that doesn't know your situation must be terrifying.

    Thinking of you always...

  14. I am glad that Dr S is becoming more and more optimistic and you all will hopefully be on board before his vacation. Thinking of you and sending positive thoughts to you and your Acorn!