Decisions, Decisions

I am coming to realize that over the course of the next several months, P and I will be faced with many difficult decisions. Some of them are less important than others, but the more I learn about T18, the more I realize just how uncertain my little Toot's future is ... there are so many babies out there living with T18. It warms my heart to know that Toot has more of a chance than I originally thought. I talked to a girl whose daughter is 5 years old and going to preschool. Grace has full T18 and is "charting her own course" as her mom said, but to know that there are babies out there who make it literally gives me chills. Maybe Toot will be one of the lucky ones? And even if she isn't, if you don't have hope, what else is there?

We have a fetal echo scheduled next week, which I am so looking forward to because the more information we have, the better. Up to this point, Toot had no major anomalies that are usually associated with T18. The only thing they found on the Level II ultrasound back at 17 weeks was small gestational age and hydronephrosis ... nothing else. Cardiac anomalies tend to be so common in these babies, and as of last check, Toot's heart looked good, though it was too early to tell if she had an ASD or VSD. The echo will give us that information ... we also have an ultrasound that day, which should tell us how everything else looks!

In no particular order, these are things I think about ...

A nursery: When we first found out that Toot had T18, I was somewhat relieved that we didn't have a nursery set up, because I didn't think I could bear the thought of staring at her room all the time. The further along I get though, I wonder if we should have something in place in case she does make it home ... I worry about setting myself up to be disappointed, but I also want no regrets ... depending on how the echo looks, we might paint the room and go from there. And I know that if Toot does get to come home, my family would have a nursery ready in about two minutes! But should we buy a crib and have it in the house just in case? One of P's friends offered us their bassinet, which is so incredibly thoughtful, so we're covered there. When you think about it, the nursery is really for the parents. Babies need love, food and sleep ... we've got the love piece covered, and I think everything else will probably just fall into place.

Induction: This is a tough one ... some of these babies are in utero for 41-42 weeks, but I have no idea if I could actually pick an induction date, because there's a good chance I would be choosing the date my baby dies. It just doesn't feel like something I can do ... I pray every night that God helps makes these decisions for me. He and Toot are in control of this and I hope with all my heart that some decisions make themselves because they're just too painful to consider ...

Delivery: Given the prognosis of T18, I had just assumed that we would opt to not have any fetal monitoring during birth and would deliver vaginally no matter what. This is my first pregnancy, Toot's chances are poor, and surgery scares the crap out of me, so why put myself through it if it won't change the outcome? But, as things move along (and I cannot stress enough that I know how early it is!) my goal is changing: I want to see my baby girl alive ... and from everything I've read, a c-section gives your baby a better chance at life. So do we opt for fetal monitoring to know if she is in distress and therefore have the option for a c-section? Or do we stick with the original plan and hope beyond hope that we get a few minutes with her? (On a side note, a lot of doctors won't even consider C-section as an option, so if it is something we think we might want, we need to make sure we have a doctor who's on board with that).

Hospital: I think this decision has been made. Up until my conversation with Elisa the other day, we had planned on sticking with our OB/GYN and delivering at the community hospital where we planned on delivering all along. Thinking about it now, I have no idea what I was thinking!?! There is a level III NICU adjoined to the hospital where I work and it's about 10 minutes from my house. The doctor that did our amnio (and is doing the echo) trained all the MFM specialists at this hospital and would be able to recommend one for us. Not to mention, we'd be able to meet a neonatologist, see the NICU and hopefully have a few familiar faces when we do in fact deliver. Plus, we'd receive a lot more prenatal monitoring than we would if we stuck with my OB/GYN. We want Toot to have everything available that she could possibly need in the event she does live. Every baby deserves a fighting chance, and Toot is no exception! But that being said, it brings me to my next concern ...

Comfort care: P and I had planned on doing comfort care only because nothing we can do will "fix" our baby girl ... but what about a feeding tube? Or BIPAP if she needs it? How do we make those decisions? Again, this is where I pray and pray that God guides us to make the right choices. I know I don't want my baby on a ventilator, and I just hope that she somehow tells us what is right ...

After: If Toot doesn't make it, what do we want? The more we talk about it, the more we're leaning towards two options. If Toot goes to Heaven early and I deliver her knowing she's with Jesus, we might feel more comfortable with cremation (something I never in a million years would have thought I'd want) and having a memorial service for her. If she survives labor and delivery, we think a funeral might be the best option. P and I have never had to plan a funeral and really don't want to either ... it's early, but I feel like we need to have a few things in place now, because I certainly am not going to want to deal with making "arrangements" with Toot in my arms! If we do have a funeral, what do we bury her in? My sister had the idea of using my wedding dress as either her Christening gown or perhaps to be buried in and I love the idea, but don't know how to go about getting that done ... and the idea of planning both the birth and death of your child is just so wrong ...

There are so many other things to consider, but for now that's what's been weighing on my mind ... for those of you praying for us, please pray with me that God just does what's best for Toot. That is the main thing here ... I do not want her to suffer in any way possible. She is so loved and no matter how short her life may be, I want her to know only love.