29 weeks & recap of our consult...

Well, how often have you been encouraged to gain a little weight?

Ok. If you are reading this, you know me, and you know that my answer is NEVER... That was the news that made me smile on Tuesday. The perinatologist practice that I see has about six sites. On Tuesday we were back at St. Joseph’s hospital in Milwaukee. We had not been seen there since our very first appointment in mid September. The nurse put me on the scale & did one of those medical gasps and said, “You have gained 5.5 pounds since your last appointment!” Then I gasped & looked at the chart she is holding and said, “I have not been seen here since September.” Her reply, “Oh”.

I am thankful that my weight did not do one of ‘those’ increases. That would mean that my body would be starting its preclamptic rebellion...but, it is NOT!! I am not spilling any protein, my blood pressure is being managed, and I even have been encouraged to gain a little weight and take it easy (still threatening bed rest). In a different season, this would be a welcomed vacation.

The consult on the other hand was like a brisk gust of wind on a forty below day. Jim and I were joined by our perinatologist, the neonatologist, the NICU nurse coordinator, & the chaplain. The nice thing about the meeting was being able to talk through scenarios. (Many of you may remember that Mara was born prematurely and we did not have the luxury of handling any crisis before it arrived.) We were all assembled except the Neonatologist. He came in and met us, sat down and said, “Why am I here?”

On a side note, my sister in law is a genetic counselor and has had many a consult where there are perinatologist and neonatologist both present. She warned me or reminded me about their different ‘approaches’. Once I remembered that...it was easier to screw my head on again.

The short version is that the neonatologist said the Trisomy 13 babies that have survivability are the ones that are not picked up inutero for any reason and arrive after delivery with a few ‘odd’ things that make them do chromosomal testing then. In his terms, “That is not the case you are in.” He talked about the ethicacy of ‘futility’....but that they were willing to ‘bend’ it a little. The best scenerio that he laid out was that we have her for a few days and we could bring her home if that is what we wanted. The cases that he talked about in his experience were in the three to 10 day range of survivorability. Although, he mentioned that the last case was two years ago, I think. If any of you are longing for anything rare & exclusive...I would recommend making it something besides this.

All in all, I think that we came to an understanding that we need to be able to have an open dialogue as we progress. We left it in the “we’ll see how she presents” and he looked at us as if we were fools but agreed and shrugged his shoulders. He is a member of the Board of Ethics so by having this meeting it should allow us to receive (limited) treatment. We should not have to present any of our plans to the board or any sort of panel. (He did say that there most likely is not a cardiologist in Milw that would touch her.)

Don’t get me wrong. He is a fabulous, well experienced doctor that had to tell us facts in a very black and white manner. I suspect this is his approach in life as well. I can only imagine that his breakfast conversation with his wife might be the same when trying to tell her that their favorite car is in the shop and it looks futile to repair it one more time.

From that meeting we were fortunate to receive a NICU tour and a Labor and Delivery tour. Each nurse manager that we met with was professional and precise. There is no doubt that this is a great facility.

We still need to decide about a birth plan. Will you pray for us? Currently, Kavannah is breech and has been for about a month. With Mara I had an ‘explosive’ vag delivery. With Asher I had a c-section with a hematoma complication that took over a year to reabsorb. I asked about a third option but it seems that medically there has been no recent advancements. Darn.

Kavannah looks good. They still have not figured out how to fully describe her heart. Truly, it does not look hypoplastic but it is not normal. Her aeoritic arch looks beautiful but they suspect that it might be something with a pulmonary ductus. Again, it will be one of those things that we learn about her when she presents. Otherwise, the guestimate is that she weighs 2.6 pounds and is lovely.

Thanks for joining us on this painful journey.
Love,
Maegan for Jim, Mara, Asher and Kavannah