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. 

Sunday, June 9, 2013

33 Weeks: last regular OB apt and new children's hospital up date

33 weeks:

Last OB Apt:
We had our last appointment with my OB, Dr C, at 31weeks 5 days. Due to our upcoming cord check with the new doc at the children's hospital and her going on a vacation we decided to go ahead and switch our care now. The apt went well and jack's heart rate was great at 152. (When Layla heard his little thump thump she exclaimed in a loud whisper, "baby!" She loves him.)  Dr C was super nice and caring and pretty blunt as usual. ;) I had been going back and forth about what to do if Jack's cord was at critical levels, but he was still under full term. Being pulled out early and without that extra birth weight would be incredibly difficult on his chances, but leaving him in would probably mean a still birth. I had thought that I would set a date of viability with my doctor and that if anything happened before then I would leave him be. I didn't want to end his growing time just so I could meet him alive. We have now decided that today is the point of viability. If he goes into fetal distress from here on out we will pull him out. It is a difficult decision to make and I did not want to be in the business of making life affecting medical decisions one way or another, but especially not for selfish reasons. Dr C helped me see that it is time, he has proven himself, and most importantly - she would pull any other baby at this stage IF the cord was at a critical level and the baby was in distress. And that is all Ive wanted was for him to be treated like any other baby and not discriminated away from medical care.

Cord Check at Children's:
We went to Children's at 32weeks5days and had another ultrasound and met with the head doctor - Dr B. During the ultrasound Jack was a mover, head down, and looking like usual. One difference this time which is a good sign, but not necessarily completely accurate though, is that he was estimated to be over four pounds and in the 42%! Birthweight is a huge helper for Chubbas. (He has chubby cheeks so momma has already given him a nickname ;)) After the U/S we sat down with Dr B and went over our general thoughts, wishes, and questions. He was quite helpful, knowledgable, open, and honest. From this point I will go weekly for OB visits there at the children's hospital. They have a full staff always available, but tend to only have ten births a month between a staff of six OBs. They have only four labor rooms. The delivery room is set up right with the infant resuscitation room so baby never leaves momma and daddy after the delivery. It is all very nice. At this point it is basically watching him and watching me for health, and as long as all keeps up we will keep moving forward week by week. Once it is time to deliver we will use Jack's health as a cue for Vaginal Birth verses CSection and then once delivered we will again use Jack's cues to hopefully guide us toward potential medical interventions -trying to find a balance in his comfort and his medical interventions - all depending on how his little body is doing.

The Kidos:
My baby girl (3y) had her first dance performance this week. She was very proud of herself and enjoyed the stage. One of her little long time friends brought her flowers for after and she felt very special. She is indeed a very special little peanut. <3
Speaking of peanuts... We found out baby Bubby (18m) is allergic to peanuts and eggs after a blood test this week. He got his first Epi Pen. Prayers we never have to use it!

I know I don't always ask and yet I recognize it is more important that anything else, but please keep praying for us. Please pray for us as parents with our anxiety, stress, strength, sleep, patience, hope, decisions... Please pray for our older children to be able to keep days full of smiles and good behavior. Please pray for Jack... For his cord to stay flowing, his continued growth and movement, and for just everything. Please pray for all those around us. Grandparents, family, and friends - to bless them for all they do for us and put up with for us and from us. ;) e Emotionally I am quite stuck and just trying to keep anything and everything shoved down because I know not what to feel or think or be.
(And please pray for a very special person to me who is starting cancer treatments this week. My heart is very much there with her too.)

1. Weekly OB at Children's with an ultrasound every other week
2. General birth plan meeting at Children's with NICU in two weeks