Lecture on ethics of neonatal intensive care and puking...a lot

Sorry for the delay in posting. Edwin and Serena (and myself and Daddy) got the stomach bug and it was a nasty weekend to say the least. Serena has been hit the hardest and she can't eat anything and all she wants is her milk, which is BAD news on the way back up, so it's been a lot of cuddling, napping, and tv these past 4 days.

Anyway, I wanted to update you all on the very interesting lecture I attended Thursday night. The neonatologist did an excellent job of presenting the history of neonatology, talking about the Miller case (23 weeker whom the parents opted NOT to be resuscitated, was resuscitated by the fellow who was on the night she went into all out labor. Parents went on to sue 7 years later as their child was severely disabled...check it out it's a very interesting case), and other ethical dilemmas in neonatal care, specifically extreme prematurity...basically 23 weekers, which clearly is right up our alley.
Anyway, he talked about the numerous health and long term disabilities associated with extreme prematurity and the lack of adequate laws to point parents or neonatologists in any "real" direction when making these ethically complicated decisions.
I also answered questions that he threw out that others didn't respond to. Like, did we agree that the OB should have allowed a mother to have her twin boys at 33 weeks because she had 3 little ones at home with no child care? Well of course I said "hell no." But they did just that week at our local hospital, and as the neo reported they were breahting on their own and feeding well. Really? Well what happens when they catch RSV and end up in the PICU on an oscialltor and lose the ability to swallow (just happened to a coworker with 32 week twin boys three weeks after NICU discharge...2 months in the PICU for one...1 month for the other.) Anyway, I DO NOT agree with elective c-sections of preemies for convienence...absolutely unethical IMO.
He also asked if we should we pass laws stating that all babies above 500 grams be resuscitated...my answer "no." Why not, you may ask? Simply because I believe in parental choice. I KNOW there are parents not suited, or who don't desire to parent children with numerous special and medical needs. Why would you "force" this type of parenthood on people who do not or cannot provide the very best care for this child? At only 500 grams and 23 weeks, the national survival rate is well below 50% and the long term outcomes...well they SUCK. It is basically guaranteed your 500 gram 23 weeker will have needs. If you know you can't deal with that, then I think you have a right not to take extraordinary all-out resuscitation measures. This is just my opinion by the way.
He also asked what option a parent of a 27 weeker would have if they did not want resuscitation. He said that most every hospital resuscitates at this gestation and the only option would be to have the baby at home. Which poses its own HUGE ethical dilemmas in my opinion because what if this baby is born breathing? Don't you have an ethical and legal responsibility to seek medical support for this child. How long do you let this child breathe at home without warmth or nutritian? DO you simply let the 27 weeker tire out after a few hours and die at home? I don't know...I can't agree with that decision.

At the end, I shared my story (most of the listeners were pre-med Holy Cross students and a couple of professors.) The kids were actually there, being entertained by my mom and the HC ballroom dancers, and came in just as I was telling the group about them. Quite powerful as I'm sure you can imagine.
I found it very easy to talk about our decisions and our experiences with extreme prematurity. I talked about what the neo told us as I layed in the hospital bed, doing everything possible to stay pregnant, about trying to understand what resuscitation would mean for our tiny 550 gram babies, and things like making Edwin a DNR and why, and issues like PDA ligations, ROP laser eye surgery, and chest compressions on my 2 pound son when he would stop breathing while feeding. I also talked about paralyzed vocal cords, cerebral palsy, and special ed. Basically I held little back, and I think that was an obligation. I don't wish prematurity on anyone, but I think understanding prematurity, and thinking about what they would potentially do is important.

As for resuscitating, we made the decision with as much knowledge as we had at the time (and of course I am sooo thankful we did.) But let's be serious here, did I really understand everything micro preemie parenthood entailed? No way. Not until I lived it, read about others living it, did I really understand. Thankfully we are capable and have the amazing support of our family to do what's best for S&E, but so many don't have this. Knowing what we know now, we are not even sure we will have more children for the fear we would have another preemie, and we don't want to put a child through that, and frankly don't want to go through that again ourselves; not to mention what it would mean to S&E to have a micro preemie brother or sister. But that whole decision will be made MUCH later...thankfully we have youth on our side and can afford to wait and seek medical advise about this. Anyway...painful subject to think about....

My SpedPac meeting was great and I had a good time having a glass of wine and appetizers with the fellow moms after our meeting, none of which have preemies (I think we will see this changing over the next several years as these micro preemies who are routinely surviving enter the school system.) I feel so thankful I've found this group of moms who have a huge impact on special education in our city. Every month we have direct access to the Director of Special Ed in these meetings. This past meeting we met with the school committee to discuss budget cuts and to advocate for limited to no cuts in special eduation.
And related to this, before Serena puked all over the place on Friday, EI came and we talked about her assessment. Serena is scoring within normal range on the Michigan test, but in some areas is closer to the 24 month than her actual age. She is entitled to stay in EI because of her paralyzed vocal cord, even though she doesn't get ST because the focus is always on her brother. She also has balance issues, but again, PT only comes to see Edwin. In fact, no one really works with Serena, which is another reason I want her in school so she receives her OWN therapy where the focus is on her and she is not being compared to her brother who is clearly so much more delayed than she. So I presented my case and the OT agreed, and felt they had enough info to advocate for her getting into preschool this September. She said that even if Serena doesn't need special ed, she could have a 504 plan for speech to have her work on her voice because of her paralyzed cord. Serena has very good language, and talks as clear as day to us, she would just need to work on using her vocal cords as correctly as possible to maximize the volume. This will take place more at age 4, but for now they should be able to get her in school at 3, which I think she needs socially and developmentally. They didn't get to score her completely because when she awoke from her nap she puked everywhere, and EI quickly left, and that began our weekend from hell.

In exciting news, things are progressing with the house we are buying. We had the home inspection and appraisal last week. Those went well. We are now awaiting the financing, and should be able to close in about 40 days! This house will mean a lot for us and especially the kids, who will have MUCH more space, a bigger yard, an above ground pool that we will be getting this summer, and so much more! With Edwin using his walker more and more, I'm excited to see how well he does maneuvering around the 1500 sq foot home versus our tiny apartment we have now.
More details on the house as we find out!!!

p.s. Edwin is saying and signing "book," is pointing to Edwin and saying "Dad," and waving and saying "bye." We are thrilled with his increased verbal language and use of sign to support his verbal language and desires! His receptive language has also improved quite a bit lately. He has "remembered" how to identify his nose and his hair and correctly, and points to Elmo and Dora in books. I guess he didn't "lose" these skills afterall! He now seems ready and excited about Signing Times, and we have been using these to help with the language (verbal and sign) and I think FINALLY this is helping him! Hurray for milestones!!! Oh and I almost forgot, although he is not yet signing "train" he understands when I sign it WITHOUT saying the word. We tested this tonight. We put a couple of his favorite toys in front of him and I said "Edwin look at Mommy" (which he did on command!!! :) ) and I said, "Where's the.." and did the sign for train without saying it. Immediately he picked up the train and handed it to me. It was amazing! He is amazing...They are both amazing! And not to be outdone, Serena is answering back and having semi-conversations with us. It's so much fun. Tonight she said, "Daddy it's stuck" (talking about the cap on a water bottle." Hands bottle to Daddy. Daddy takes off the cap. "Thank you Daddy" and off she runs. Or, she'll say, "What's "Aunie" (Edwin) doing?" She'll run to his bed and say, "Oh, he's sleeping...sshhhh" as she puts her finger to her lips. It's hilarious!