29 Week Update

So where do I begin...lots of information and I only have one brain to put it all in. LOL. Last Wednesday before Thanksgiving, Bryan and I had the opportunity to start working with MPP and Children's Hospital to establish the relationships with different doctors who will care for me and for Nicolas.  Initially I thought we would have a lot of time to kill with an appointment at 1PM and the other at 3PM.  I found out quickly that we would actually need all the time given to us.  The first appointment was with MPP to do an OB intake where they get all of my medical history (felt like a train wreck on paper) and then do a quick check on Nicolas.  Both the nurse and doctor were great and very personable.  I felt as though the cared about my well-being more so than what I experienced elsewhere. The nurse attributed that to the fact they deal in high risk pregnancies all the time. She wanted to make sure my nutrition was on target and was happy that my chiropractor had me on some of the same vitamins and supplements they would have recommended. A quick ultrasound scan showed Nicolas has flip flopped and is now facing downward. It might have explained some discomfort I had earlier in the week.  We spoke with the OB doc who answered our questions.  The doctor has indicated that they do not really want to induce me or pick a date.  He said it is very likely that because of the excess fluid I will naturally go early.  He indicated that many times when they induce and the body isn't ready they end up with unnecessary c-sections.

After that appointment we headed over the Children's Hospital to meet with one of the neo doctors. I found her also very personable and she had a great conversation with us about Nicolas.  She has given us more insight into what we can expect at birth, more about the stomach issue and how it could be repaired.  She definitely has more knowledge about Trisomy 18 babies and agrees that no two situations are ever alike. I felt more confident that they will support our wishes to give breathing assistance to Nicolas if he should need it and to also correct the stomach issue for him as well. She explained that once he is born he won't be whisked away to the other building, but that he will be brought into another room where he would get assistance if he should need it.  They would let Bryan follow Nicolas over to watch everything as long as he doesn't faint.  If all goes well, they would bring him back to me before transporting him through the tunnel over to the NICU at Children's.  Nicolas will have to undergo a full evaluation for many things.  The stomach is a big one.  If all goes well and he is stable, they indicated he could have surgery on day 2 to repair the esophagus to the stomach.  BUT they don't know what his condition is yet and how the repair would work until they evaluate him.  Probably one of the better things to arise was the decision to forgo the MRI scan on Nicolas.  Both the OB and neo doctor felt that it would not provide any additional information and is incredibly hard to do an active baby in utero. I am glad because it would not have been comfortable for me and is quite expensive.

We ended our time with a tour of the level III NICU at Children's Hospital.  They have a very impressive setup with each baby getting their own private room and nurse. There are couches for family and wi-fi so I can keep people posted on his situation. They do, however, have a stricter policy on visitors because these babies are so fragile.  Adults have to be escorted, need to have a flu shot, and cannot have any illnesses.  We are hoping to get an exception for Jena because of the circumstances, but know she may be limited in her visits.  It is very limiting and I really hope they will allow her through. I don't think it would be fair if she only could see her little brother for 15 minutes a week. YES. I stated that correctly. 15 minutes a WEEK not per day.  They don't allow any children that our not siblings in the NICU because of the risk to the other babies. Just more details we have to work through as a family. I think the hardest part is I will be over a 1/4 mile away and have to wheel or hopefully walk myself over to see Nicolas.  We also were told that the esophagus repair could lead to at least a month in the NICU.  Ultimately we don't know what scenario will play out for Nicolas, but can only hope and pray for the best.

Last night we had an opportunity to meet with a social worker from Children's Hospital who works with the DEEYA program which provides hospice and palliative care for children.  At first I was reluctant to meet with the group because the negative connotation that hospice brings, but then found out more about the group that put my mind at ease.  The social worker was very kind and really gave us a sense of what they can do to help our family (all of us) get through this situation. They have specialists who can work with the girls and nurses to answer questions on care.  The program has seen all sorts of Trisomy 18 families and uses their experiences to help other families. They respect each family's decision and don't judge you for what you may do or not do for your children.  The social worker also presented us with some beautiful handmade quilts for the girls and for Nicolas. They also gave us a baby book that was designed by a mother who went through a similar experience to capture moments.  She had some many great tips and ideas to help us. It was very useful and really got me thinking. The other reassuring factor is that if Bryan and I really want to see Nicolas make it home, the DEEYA program will help us with that no matter what the circumstances are. 

Taekwondo class yesterday at noon. I am in the black shirt/white pants.
Happy that it isn't a profile shot!!!

Well it is time for me to get back to work. I was a tad bit late getting in because I was experiencing some acute abdominal pain around the belly button. I wasn't quite sure what it was and ended up going to Abbott once Bryan got home from work to be evaluated. Turned out to be nothing serious and probably related to my growing waistline from the excess fluid. In the end it was a good dry run to the hospital for Bryan.  He needs to get familiar with the route to Abbott.  Plus we did some of the admitting paperwork. 

I don't think there is ever a dull moment in our house.  This week is busy with Jena's taekwondo belt graduation on Friday evening, Christmas Village for the school on Saturday morning and the Peppermint Twist gymnastics meet Saturday afternoon. AND Bryan has class on Saturday.  It's all good. I love watching the girls compete although I am sad that Noelle is not quite ready yet because of her back injury.  She is working hard to be ready for January.  The team photos turned out great. So proud of my two ladies!!!