Tuesday, June 25, 2013

35+ Weeks: Birth Plan, Neonatal Meeting, Jack, & NICU Tour Gone Bad


35 weeks: 

General Pregnancy Details:
-Still gaining weight :-/ huge belly!
-Sciatic is decent, but keeps me with very little activity
-craving chocolate covered raisins! 
-super swollen already :( 

Writing The Birth Plan @ 34w:
In preparation for Jack's birth we had to come up with our general wishes when considering labor, delivery, medical intervention, medications, treatments, surgeries, etc... So, I started by reading through a dozen different birth plans from other Trisomy moms and highlighting my shared feelings. In addition, Jack's neonatal team emailed me a generic check list to use as well. It made me so sad reading through the other Moms' plans. I just felt so bad that they had to lay out in advance specific ways to help or not 'help' their struggling child. They had to choose how they would intervene or how they would comfort or how they would say goodbye and type it out and then sit and discuss it with strangers - all the while knowing they have no clue how anything will really play out. Sometimes it doesn't hit me that I am having to do these things too. Sometimes I am so outside of my body just going through the motions. I do not visualize ANYTHING about that day. Ever.
I finished the potential plan. First, I wrote out labor and delivery wishes. This was nothing like with my first two. I had so many darn rules about natural this and natural that with them. This time I basically said what would be my preference, but that I am willing to go through anything and everything at any point if Jack needs it. Then I had to write out post birth - what interventions to do if he is needing breathing aid, feeding aid, ect... I also had to write out what may be too much aggressive action and at what point to just stop trying and hand him over to hold. Who on earth knows what'll happen, but we have to be educated and ready.  As ready as possible I guess. Now, before we meet with the neonatal, I will have to sit with my husband and see how he feels about each specific detail. These are such huge ethical decisions for one person to decide, none the less for two people to agree upon, and then both have to live with forever. We are so blessed to have such great communication with one another. Please pray this cohesiveness can continue through our huge life changing decisions. So many what ifs... 

Jack @ 35w:
Baby boy is looking fabulous. His cord flow isn't better, but isn't worse, so we shall carry on and allow him to keep growing as long as possible. They estimate he already weighs five pounds, which is such a blessing. He does lots of practice breathing and hiccups in there. He has always had his hands over his face, but this week we caught him sucking his thumb on ultrasound quite a bit. This is also a very good sign developmentally. 

Neonatal Meeting @ 35w:
This meeting went as well as can be expected. I don't feel like talking much detail, but thought Id quickly update for the sake of updating. 
We met a new Neo Doctor and he was fabulous. Lots of helpful scenarios all the while treating our child like a human. We went over the birth plan and made choices as parents and clarified as a team. The plan is to mostly watch baby Jack and respond accordingly with medical intervention ranging from non invasive to aggressive depending in his needs and signs. 

After the meeting we were going to have a tour of the Nicu. Our sweet Neo rep nurse, who meets us every week, took us thru the doors and we met the desk staff, then we started to walk into the actual NICU where I got about two feet in before I was overcome and turned and bolted out of there. I lost it in an ugly cry sort of way. Our nurse snuck us into a meeting room so I could pull it together, but it was obvious I would not be able to do the tour. I am able to sit through hours of ultrasounds and meetings discussing interventions and death, but I do it all in an out of body sort of way. I think perhaps stepping into that NICU and seeing those babies was too real. Part of it was just seeing a tiny newborn (something Im not interested in at all), part of it was knowing they were all sick, or seeing the ones who had no one at their side, and then part of the breakdown was probably the reality that I may be there sitting in that chair in my very near future. 
The crazy thing is that IF we DO make it to the Nicu that is an odds defying blessing. Most parents would tour a NICU praying to never have to go there. We were touring it for the best case scenario possibility. And apparently I couldn't even handle that. 

2 comments:

  1. I pray with you everyday. I talk about Jack to Andy and we just want you to know that we are praying for you as you have to do these hard things and talk write out these plans. He is your boy- always! and we love him with you. I hope that I can see that belly soon- seems like we haven't connected at The Summit since Easter!

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  2. Love you Rach and praying for you and Patrick!! I think of you every day and pray for continued peace that can only come from the Lord.

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